In Round 3 of my battles with Melanoma, I have decided to no longer sit on my hands. Its just too much. I need to let it out of my "skin". Be an active participant in this cancer thing, instead of just hoping it will stand at the doorway and leave me alone. And so I will write.

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Monday, February 17, 2014

Chapter 9 - Cancer Free Depression

Of all the
chapters this one has been the hardest to write. The others just came and
flowed naturally, where this one came like a small boat in choppy waters. A
little disjointed and nauseating.

I think the
problem lies in the completion. The others were written after the fact, looking
back on memories. Where this one is a current event. I guess it’s easier to
write in hindsight. The present is often so unclear. Unresolved.

Right now I
find myself ebbing and flowing, in and out of the depression that comes from
being "cancer free" or what the melanoma world refers to as
"NED". No evidence of disease.
I have come in and out of NED the way I have come in and out of this
cloud. I told my husband the emotional forecast: slightly overcast with sunny
breaks and intermittent black clouds.

Up until now, I
have written mostly of what brings me up, keeps me going, but I’ve had my dark
days hiding in my room. There are days when my anxiety made me impatient and
abrupt. But dwelling on the low points isn’t what gets your through. So I have
chosen not to explore them very deeply so far. I wanted to give hope by
my words. But the time has come to share some of the bleaker feelings
too. It is part of life. Part of my life. Part of what I am experiencing right
now. Part of loss. Loss of health, loss of loved ones, loss of
"normal". (Whatever "normal" is anyway. )

I know “Cancer
Free Depression” sounds like an oxymoron, a contradictory statement, but to my utter
surprise, it was the reality I found myself in just a few short weeks after
hearing the wonderful news that my lymph nodes were cancer free. “Depressed?!
What in blazes! But I’m cancer free! NED! How could I be depressed?!” I think some of it stems from life being put
on hold. The problems you had before cancer
seemed not so big anymore. When the cancer
is supposedly gone, you imagine life will be so much better now, like a fairy
tale! But all those things you put on
the backburner, suddenly come back to haunt you. All the paper work you put
off, the projects around the house, are still there. Life is still there. Sigh.

So what do you
do when you find yourself depressed and cancer free. You look online of
course. To my delight and dismay, this
was apparently normal. Stating the
obvious, one article reminded me, “You HAD CANCER”, not the flu. "The physical and mental shock of having a
life-threatening disease, of receiving treatment for cancer, and living with
repeated threats to one's body and life are traumatic experiences." The fallout
from that is huge. The good ole “Mayo Clinic” had this to say, “Recovering from cancer treatment isn't just about your
body — it's also about healing your mind. So take time to acknowledge the fear,
grief and loneliness you're feeling right now. Then take steps to understand
why you feel these emotions and what you can do about them.” Even though the cancer hasn’t killed
you, cancer still kills a small part of you, the part of you that feels safe.
The invincible spirit we all carry somewhere inside us, it’s gone. There is grief in that loss. And with grief
comes depression.

After my first
melanoma, I still had no idea how serious it could be. The optimism surrounding
skin cancer almost makes you feel foolish for being worried at all. Thankfully, many can get melanoma and just walk away. They blissfully allow themselves
to share the outlook the majority of the world has, "Just cut it out” and all is well. I am happy for those that are spared the
trauma of knowing how close they came to having life hang in the balance. Once
upon a time, in Round 1, I was one of them.
It was traumatic, but not earthshattering, it was a blip on the radar
that went away. Certainly, it was a larger blip than average, but still….. just
a blip. I thought I knew melanoma and I truly
thought that would be the end of it. “Chapter
done, move on”. Melanoma was supposed to
be just one chapter in the book of life, not a book in itself. I am still hoping this will be a short story,
and not a novel.

Any kind of
cancer makes you feel unsafe for a certain length of time, until you’re considered
“cancer free”. Till then you are on the watch, hyper aware of your body, each
pain, or lump. Is it back? With
melanoma, that time period is horrendously long. For most cancers it’s a 5 year
benchmark. But with stage 2A melanoma, my odds actually go down after 5 years. For me, that means 80% survival in 5 years, and
60% btwn 5-10 years. That seems so backwards. Shouldn’t it go the other
way? Even 10-25 years later there is
still a 7-11% chance it will metastasize! I won’t be considered “cancer free” till 25 years or more of being NED then??? That is, IF I don’t get any more primaries in the
meantime. NED,no evidence of disease, doesn't mean cured, it just means, not
in active battle. It’s a life sentence, no early parole. That’s far too long to live with a shadow
hanging on the sidelines. Do you “have” cancer, or is it past tense, “had” cancer?
NED is neither really, its somewhere in limbo land.

Once you get
this deep, literally 2.45mm, melanoma never truly goes away from your life. It
is an ongoing concern somewhere in the back of your mind. Most people don't casually check their lymph
nodes on occasion, just to see if there is any latent pain hiding there, or an
identified lumpiness. But I do. Most
people don't see a Doctor every 3 months to check for cancer. I do. Most people
don’t have skin removed on a semi regular basis. But I do. If the medical
community thinks every 3 months is necessary that kinda makes you a little more
wary yourself. Others have described how before every check up, they worry whether
a new one will be found. Then if none are found, they worry it might have gotten
missed. And if one is taken off, then you wait to see if it’s bad news. Sure
you say you will put it in the back of your mind, pretend it isn't there, but
your anxiety level speaks differently, and your patience level tells a
different tale. Your sleep is a little
less easy. Your mind a little scattered. But you put on the happy face and
pretend it’s all ok. This game will go on at least once a year for the rest of
your life.

But why should
you worry so much? Melanoma is one of the “good” cancers right? That’s what
your Doctor will tell you if you catch it early. I will let the facts speak.

A 10mm cancer of
other sorts, is stage 1, the very treatable kind. On the other hand a 10mm melanoma is
tantamount to a death sentence. A 1
millimeter melanoma tumor (one-tenth the size) already carries a significant
risk of having spread. In fact, I was
surprised to find out that the survival rates for stage 2 melanoma are the same
or worse than for stage 3 breast cancer. The overall 5-year survival rate for
patients when detected early, is about 98%. It falls to 62% when it reaches the
lymph nodes, and 15% when it metastasizes to distant organs. And it can grow
and spread very quickly compared to other cancers. Once spread internally,
melanoma is very difficult to treat, since it doesn’t respond to conventional
cancer treatments. For stage 4 melanoma patients, that’s the last stage, the
American Cancer Society recommends this: “Because stage 4 melanoma is very hard
to treat with current therapies, patients may want to think about taking part
in a clinical trial.” Experimental
treatment is your best option? Yikes! That is daunting. There is no “usual” treatment plan per say. So
even though it is easily preventable and easily treated at its earliest stage,
it is not one to mess with. You don’t want this cancer to get a foot hold. You
want to catch melanoma at stage 1! Even then, you can go from Stage 1 NED to being voted most
likely to die, within those 3 months between you scheduled Doctor checkups. If you were faced with this as a possibility,
would you be worried? Would you want to be informed of new treatments when they
came available?

After round 1,
the depression and the shame came and went within 6 months. Then I began to
live again, feel “normalish”. I still felt a sense of safety, and control. I thought as long
as I kept up my skin checks, all would be well. I would just catch them all early.
But after round 2, safety was blown out of the water. I was realizing how
serious this was, the stats were no longer so sunny, and control was become
slippery. But Six months seems to be my personal yardstick for the depression
period, and I felt myself getting past it, feeling a teeny bit safe again. I was ready to tackle the next coming years, thinking
of moving forward. But melanoma had a different plan. I had barely gotten the chance to catch my
breath when round 3 began!

Have I told you
about Round 3???????

Feb, 2013, at my
regular checkup. Dr. Derm is doing his usual looksee, in the cute gown and conscientiously
warm room. Totally routine. “Are you wearing sunscreen? Taking Vit D? How much are you taking?” He moves aside the gown from my “gluteus” area
and pauses. Then squats. Then gets out his measuring tool. Then his special light and magnifier. He has been looking at my buttocks for an
uncomfortably long time. Then he says, “I’m just going to put a bit of water on
this one, sometimes it helps me see it better” More magnifying, more pausing.
“Can you lay on the examining table for a moment?” Then ……..“I’d like you to make an appointment
to have that one removed, it has grown significantly in the last 3 months”. Awe man…….

When I felt it
later, the offensive mole, it had texture, just like my first one. People tried to console me by saying it was
probably nothing, but I was sure, 99% sure, this was another melanoma. When I looked at it in the mirror, it looked
like a piece of dried raisin stuck to my butt.
Dried raisin attached to your skin isn’t good.

I was so
disheartened when it came back as my third melanoma. This CAN’T be good. I could see the statistics sinking in a downward
spiral. The numbers have been stacked the wrong way round. I was winning every
small number lottery. Only 10% of melanomas are hereditary. This one certainly was not caused by the sun!
Only 6% of melanoma patients get a second primary. Won that one! Twice! I don’t want to win the small number lottery
with this disease. I’m not a gambler! How did the numbers get stacked this way
round? I felt, and still feel, like a walking time bomb. Problem is, I don’t
know how long the fuse is, and there’s no way to check. With control pretty
much out of my hands, I could feel depression laying down on me like a heavy
blanket.

As I felt myself
sinking into darkness, I did what I have always done, I turned to the “pen” for
healing. Words are my friends. I love
words. How they have such deep meaning, nuances and shades. The further I delve
into their rich history, the more I appreciate them when used properly. Words would become my friends and comfort.
And sharing them with you has made those words have life and meaning. It gives meaning to the meaninglessness of
this experience. Of cancer. So I started to write. It was the only way I could put a sense of
control to the uncontrollable. And it was a savior.

I turned to
talking to you. I shared my words and thoughts on my blog. Now I needed to know the beast I faced,
inside and out, and I shared the information I found on my facebook page. I did this for myself, and for you, in hopes
that I could provide understanding, and give the gift of knowledge. Maybe my understanding and knowledge could give
you the power to determine a little piece of your own life. Maybe I could help
you cope by seeing what has helped me.

In my research, I found out that half of
all cancers are preventable. I also
found out that of all cancers, skin cancer is the most preventable. Sadly, I
also found out how misunderstood and underestimated skin cancer was too. I wanted, ….no,
I needed, to talk to someone. As the
opening of my blog says, “In Round 3 of my battles with Melanoma, I have
decided to no longer sit on my hands. It’s just too much. I needed to let it out
of my "skin". Be an active participant in this cancer thing, instead
of just hoping it will stand at the doorway and leave me alone. And so I will
write……….”

9 comments:

I know the feelings of grief, loss and helplessness. Not of cancer but of many other things including health. Keep on posting even when it's rough it will take the internalization and put it to use, and it is helping others realize the seriousness of prevention. Thank you for letting us see into your life and battle with this. We love you and your family, and you are in our prayers.We are here for anything you need during this time and always.Xox whit & slav

THANK YOU SO MUCH for putting into words what I'm sure many people feel, but may be unwilling to voice. Sometimes I read all the "Rah-Rah!! Be positive! I'm so grateful!" posts, and I wonder "Am I the ONLY one who still feels scared/depressed/worried/as though I'm always waiting for the axe to fall? Is there something WRONG with me?" Knowing someone else feels that way as well, and is willing to actually put it out there for others to read? Just... thank you.

I am so glad my words have helped you. That they reflect your own feelings. It is reality and not one that those who have never had cancer understand. There is trauma, fallout, even if you are supposedly "cancer free"..... for now. Thank you for posting your comment!!!!

You write so eloquently and appear so strong on the outside. No one would ever know the turmoil going on inside. I admire your strength and sense of purpose. Keeping you and your family in my thoughts and prayers. Dagmar

Thanks for your comments and compliments Dagmar! For the most part I am able to find joy in the mire, but the darker thoughts are still there lurking around. Then it comes out and attacks me at times. Colors the quiet times. It was nice to finally meet you!

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The Nitty Gritty Short Story

Strong family history of melanoma. Grandpa, Great Uncle, Uncle, Aunt, Mother. All on my mother's side. My Uncle, & Great Uncle died from melanoma. It's undetermined what kind of cancer my Grandpa died from. Also Grandma on my Dad's side.

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The Lyrics to "Brave" by Josh Groban, Are So Fitting

Smile into the fear and let it play, You wanna run away and you say it can't be so, You wanna look away but you stay, Hold out your hand in the face of what I don't understand, My reason to be brave. Hold on hold on so strong, Time just carries on, All that you thought was wrong is pure again, You can't hide forever from the thunder, Look into the storm and feel the rain.

Disclaimer: Mission Melanoma is a blog about my personal experience with melanoma and is not intended to serve as a medical adviser. If you feel you need medical advice, please seek the attention of your doctor or dermatologist.